My name is Nathalie Deetens. Mother to 3 lovely daughters. Our youngest daughter is diagnosed with a neuromuscular disorder called spinal muscular atrophy (SMA). Concretely this means that she lacks a gene causing her nerves not to communicate with her muscles. As a result, her muscles slowly but surely become atrophic and therefore die. Considering that everything is a muscle, as a mother you quickly realize you have to take action.